TV star and disability campaigner Jono Lancaster helps create guide for parents on facial disfigurement

Jono Lancaster who has Treacher Collins Syndrome. Picture: Tony JohnsonJono Lancaster who has Treacher Collins Syndrome. Picture: Tony Johnson
Jono Lancaster who has Treacher Collins Syndrome. Picture: Tony Johnson
TV star and disability campaigner Jono Lancaster has helped create a new guide for families in the hope of normalising facial difference and opening up the conversations to have with children.

Jono, from Normanton, was born with Treacher Collins Syndrome - a rare genetic condition, believed to affect around one in 10,000 babies, which meant he was born with no cheekbones and hearing difficulties.

He is an avid campaigner and set up his own foundation called Love Me Love My Face, to raise awareness and support families with the condition.

Hide Ad
Hide Ad

Now, in his role as an ambassador for the charity Face Equality International (FEI), he has helped create the first ever guide for parents on facial difference.

Working with fellow ambassadors, the guide’s release marks the third annual International Face Equality Week - a global campaign aiming to highlight people with facial differences.

The guide contains simple tips on how to discuss facial disfigurement with children, how to react if they point at a person with facial difference and the best ways generally to normalise an underexposed area of diversity for little ones.

Jono said: “This guide is to tackle moments like when a child is helping mum do the big shop in the supermarket asks: ‘Mum, what’s wrong with that mista’s face?’

Hide Ad
Hide Ad

“Then the mum goes ‘shut up’, drags the child away and they both scuttle off in the other direction whilst trying to avoid me for the rest of the time.

“All I really expect is for you to be open-minded and to be greeted with a genuine smile.”

Charity chiefs at FEI said they took advice from experts to create the visual guide, to help change perceptions among children.

Phyllida Swift, the charity’s CEO, said experiences faced by someone with a facial disfigurement are a result of “unwitting, well-intentioned awkwardness”.

Hide Ad
Hide Ad

She added: “But a drastic drive for greater education across key sectors and communities can all help us to make face equality a reality.

“That’s why we’ve created this guide for parents, recognising the power that they can have in shaping young minds to respect and understand difference.”

Related topics:

Comment Guidelines

National World encourages reader discussion on our stories. User feedback, insights and back-and-forth exchanges add a rich layer of context to reporting. Please review our Community Guidelines before commenting.